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TL;DR: If you have CFS, you will benefit from a mobility aid, now. Do not wait until you get worse. Get One Now.
If you don’t want to read anything else, then if you’re independent, get a rollator, if you have a carer, get a self-propelled wheelchair. If you want both in one, there’s a combination rollator-wheelchair available.
For any aid you get, you must make sure it is the right size for you, as much as possible, as incorrect sizes can make them less effective or cause actual damage. If you weight above 200lbs, check the weight limit on anything you're getting.
Note: this guide is very North American and European focused, because that’s where I have lived. If you have information about other places, please let me know, and I’ll add them in.
For people newly diagnosed with CFS, especially who have had CFS for much longer than they’ve been diagnosed, I recommend canes as a way to remind yourself to slow down, and to catch when you’re getting tired. I was used to shuffling my feet, but it was very obvious to me when I started dragging my cane and falling out of sync, so this was my sign to sit down.
Also, as much as many of us are reluctant to admit it, we’re disabled. A cane can be a relatively discrete indicator of this, to ourselves, and to others.
Rollators come in two types, A-line (more common in North America) and European style (more common, as the name suggests, in Europe). A-line rollators tend to have smaller wheels, which allows a smaller turn radius and is better for indoor use. They tend to have a metal bar in foam for the backrest, and a cushion over a metal basket for the seat. European rollators have larger wheels, usually have mesh or fabric seats, backrests, and bags, and are better for outdoor use. There are other types of rollators, but even within those two main types they’re fairly similar.
A rollator would be my primary recommendation for people with CFS, as the frame prevents people from bumping into you, allows you to sit whenever needed, and are typically be transported in even a small car.
Although more than 75% of wheelchair users are ambulatory, meaning they can stand and walk in some ability, there is definitely a widespread perception that all wheelchair users are paralysed.
When looking for wheelchair information, the experiences of people with POTS or EDS are more likely to be relevant than the experiences of someone who is paralysed.
Unfortunately, it's harder to push yourself in a wheelchair than it is to walk, and every electric wheelchair or assist has significant downsides, so a wheelchair may not always be the right choice.
Casters: casters are the front wheels on manual wheelchairs. Smaller casters allows for smaller turning circle. Larger caster wheels are better for rougher terrain, but they are more likely to wobble badly when going at faster speeds, so for CFS people, smaller caster wheels are probably better
They’re very hard to self-propel for extended periods of time because each joint that moves or bends distributes some of the energy you’ve put pushing. Also, any wheelchair with a back higher than your shoulder blades will be difficult to self propel in, because you need to move your arm far back to get the full range of motion.
You can modify an off-the-shelf wheelchair with the help of a hacksaw and an abundance of audacity (or, preferably, a friend who’s good at DIY)
Outdoor wheelchairs are often weigh enough that you cannot put them in standard cars. Even lighter weight chairs are unlikely to be light enough for a person with CFS to lift, with the lightest weight options starting at about 40lbs. Electric wheelchairs can be extremely difficult, or even impossible, to move when out of battery, so it’s important to be aware of the limits of the chair you’re using.
Electric wheelchairs are about as much effort as a car, and require the maintenance and care of one.
An electric wheelchair would almost certainly improve the life of any person with CFS, but each electric wheelchair is designed for a specific, narrow purpose.
Consider:
Mobility scooters are about as much effort as a car, and require the maintenance and care of one.
End Note: This guide is a work in progress, please share your own experiences, or anything you think I'm missing. I'm trying to hit the balance between useful information, and readable. Also, I know more about rollators than mobility scooters, and it shows. The first thing to adjust is to add pictures, but I wrote this all today and I'm done for the day lol.
If you don’t want to read anything else, then if you’re independent, get a rollator, if you have a carer, get a self-propelled wheelchair. If you want both in one, there’s a combination rollator-wheelchair available.
For any aid you get, you must make sure it is the right size for you, as much as possible, as incorrect sizes can make them less effective or cause actual damage. If you weight above 200lbs, check the weight limit on anything you're getting.
Note: this guide is very North American and European focused, because that’s where I have lived. If you have information about other places, please let me know, and I’ll add them in.
Canes
Canes are primarily for stability, though they can also help reduce pain in a single leg or hip by distributing some stress to the arm and shoulder using the cane. There are different handle types, folding canes, canes that can stand on their own, and tripod canes the user can sit on. I would recommend anyone with CFS get a cheap folding cane. It’s easy to store, and can provide minor benefits. Make sure you size your cane correct - to make this possible, either get measured for a fixed length cane, or buy an adjustable length cane.For people newly diagnosed with CFS, especially who have had CFS for much longer than they’ve been diagnosed, I recommend canes as a way to remind yourself to slow down, and to catch when you’re getting tired. I was used to shuffling my feet, but it was very obvious to me when I started dragging my cane and falling out of sync, so this was my sign to sit down.
Also, as much as many of us are reluctant to admit it, we’re disabled. A cane can be a relatively discrete indicator of this, to ourselves, and to others.
Crutches
Crutches assist by removing weight from one or both legs, or by providing more stability than a cane. Depending on how a person moves with their crutches, it can provide different benefits. Without knowing more, I would recommend forearm support crutches primarily, and then elbow crutches if cost is a significant factor. Make sure you adjust the crutches to your correct size, there are lots of guides for this online.Underarm Crutches
Underarm crutches, also known as axilla crutches, are most common is North America and are most common for short term use like a broken leg. They’re not ideal for long term use because they’re less manoeuvrable than the other crutch options, and can bruise or dislocate the shoulder/armpit. They’re worth considering as they use less upper body strength, and can often be found for extremely low costs because they’re intended for temporary use.Elbow Crutches
Elbow crutches, also known as lofstrand or forearm crutches, are the most common option for long term use. They take more time to get adapted to, but then are easier to navigate for most people. Also, if the brace around the forearm is secure, then the user can move their hand/arm without dropping their crutch.Forearm Support Crutches
Forearm support crutches, also known as arthritic, platform, or gutter crutches, are the rarest option. Forearm support crutches are best for anyone with hypermobility and are usually more recommended for chronic pain (but that’s a complicated subject, as it depends on cause and type of pain).Walkers
Classic walkers, zimmer frames, and rollators provide very different support. Make sure you adjust your walker to your correct height.Classic Walkers
A standard walker provides more stability than a cane, and requires less coordination than crutches. They tend to be very light, and foldable, so they’re easy to pack into a car. A walker has four rubber tips, and has to be lifted and placed down again with very step, for this reason, I don’t recommend classic walkers for most people with CFS.Zimmer Frames
A zimmer frame is like a standard walker, but has two small wheels in the front. Only the back has to be lifted, which can allow the user to walk faster, in a more normal pattern, but this also makes it less stable. The wheels don’t turn, so a wider turning radius is required. I mostly wouldn’t recommend it for people with CFS.Rollators
Rollators are walkers with wheels on all four ends, and usually a seat, basket, brakes, and backrest. They’re manoeuvrable, but not great for stability. They allow a user to take some weight off their legs, but mostly they provide a travelling seat, and by providing a basket, allow the user to travel light. Most rollators can fold flat and weigh about 15-20lbs. Rollators are particularly useful for anyone with orthostatic intolerance.Rollators come in two types, A-line (more common in North America) and European style (more common, as the name suggests, in Europe). A-line rollators tend to have smaller wheels, which allows a smaller turn radius and is better for indoor use. They tend to have a metal bar in foam for the backrest, and a cushion over a metal basket for the seat. European rollators have larger wheels, usually have mesh or fabric seats, backrests, and bags, and are better for outdoor use. There are other types of rollators, but even within those two main types they’re fairly similar.
A rollator would be my primary recommendation for people with CFS, as the frame prevents people from bumping into you, allows you to sit whenever needed, and are typically be transported in even a small car.
Upright Walker
Upright walker is a walker where you brace with your forearms instead of your hands, and are an alteration that comes on all the previous types of walkers. They can help prevent hunching, and are better for hyperflexible people who are prone to dislocation.Wheelchairs
Wheelchairs are a big choice, because they come in the full range of prices from $100 to $15,000, and are seen as a typical symbol of disability, which can make them harder or easier to use than other mobility aids.Although more than 75% of wheelchair users are ambulatory, meaning they can stand and walk in some ability, there is definitely a widespread perception that all wheelchair users are paralysed.
When looking for wheelchair information, the experiences of people with POTS or EDS are more likely to be relevant than the experiences of someone who is paralysed.
Unfortunately, it's harder to push yourself in a wheelchair than it is to walk, and every electric wheelchair or assist has significant downsides, so a wheelchair may not always be the right choice.
Casters: casters are the front wheels on manual wheelchairs. Smaller casters allows for smaller turning circle. Larger caster wheels are better for rougher terrain, but they are more likely to wobble badly when going at faster speeds, so for CFS people, smaller caster wheels are probably better
Transport Wheelchair
Transport wheelchairs have small rear wheels, so the person sitting within cannot move or adjust their own position, except by scooting forward and using their toe, or foot, to adjust. However, transport wheelchairs are often available second hand, and are available even first hand for a low cost, so they’re worth considering if you don’t have the strength to move yourself at all.Self Propelled Wheelchair
Self-propelled wheelchairs have large rear wheels which you can use to move yourself. These wheelchairs can still have handles that allow someone else to push you, but don’t always.Hospital Wheelchair
These are durable, heavy, and difficult if not impossible to actually move yourself in. The placement of the back wheel means you cannot do a wheelie, which is required for moving yourself over curbs or most bumps over a half-inch.Off-the-Shelf Wheelchair
These have a lot in common with hospital wheelchairs, though they tend to be lighter and less durable. If you need to, you can get a $500 wheelchair which will serve you as well as one 3x its price. You can often get these second hand, and they only require a few measurements.They’re very hard to self-propel for extended periods of time because each joint that moves or bends distributes some of the energy you’ve put pushing. Also, any wheelchair with a back higher than your shoulder blades will be difficult to self propel in, because you need to move your arm far back to get the full range of motion.
You can modify an off-the-shelf wheelchair with the help of a hacksaw and an abundance of audacity (or, preferably, a friend who’s good at DIY)
Folding Wheelchair
Folding wheelchairs can be custom-made, like the fixed-frame below, and have a range of fold-ability. In general, the more foldable it is, the harder it is to self-propel. But, of course, the more foldable is it, the easier it is to store. For people with CFS, I would strongly recommend a less foldable wheelchair, unless you cannot fit a non-folding chair in your car or house.Fixed Frame Wheelchair
Fixed-frame wheelchairs are the lightest weight and the easiest to self propel. They are the least likely to have built in push handles, and have a starting cost of about $2,000 are they’re custom-made to your measurements, and cannot be adjusted once they’re finished. While a fixed frame wheelchair is a reasonable choice for many people with CFS, you absolutely must speak to a professional to be measured and make sure your needs are being met before you get one.Electric Assist on Self Propelled Wheelchairs
Electric assist is an add-on which you can get at any point, though not every electric assist is compatible with every wheelchair. Different electric assist devices have different levels of water resistance, maximum speeds, costs, and maximum inclines. Electric assist options start at about $4,000.Electric Wheelchair
Electric wheelchairs come in a massive range, and depend heavily on your needs, and start about $1,500. Your use-case, environment, and budget will all affect the features of your electric wheelchair.Outdoor wheelchairs are often weigh enough that you cannot put them in standard cars. Even lighter weight chairs are unlikely to be light enough for a person with CFS to lift, with the lightest weight options starting at about 40lbs. Electric wheelchairs can be extremely difficult, or even impossible, to move when out of battery, so it’s important to be aware of the limits of the chair you’re using.
Electric wheelchairs are about as much effort as a car, and require the maintenance and care of one.
An electric wheelchair would almost certainly improve the life of any person with CFS, but each electric wheelchair is designed for a specific, narrow purpose.
Consider:
- Where are you using it? (Indoor, outdoor urban, or outdoor wild)
- How are you transporting it? (car, public transport, custom car, never - it’s staying where it is)
- How long are you using it in one go? (how long does the battery need to last in one go?)
- Where are you storing it? (If you live in an apartment without an elevator, an electric wheelchair might not be a good choice since the batteries can be heavy!)
- How often are you going to use it? Electric wheelchairs have batteries that will break down without regular use.
- What weather do you have? Many electric wheelchairs shouldn’t be used in rain or wet, and can only go up low levels of incline, so people in hilly or wet environments may get less benefit.
Mobility Scooter
Mobility scooters are intended for outdoor, urban use, and start at about $600. They can be a good choice to allow a person with CFS to spend more time outdoors without needing to walk, but most mobility scooters are steered using handles that can be tiring to use. You can often try mobility scooters for free at shopping centers or mallsMobility scooters are about as much effort as a car, and require the maintenance and care of one.
End Note: This guide is a work in progress, please share your own experiences, or anything you think I'm missing. I'm trying to hit the balance between useful information, and readable. Also, I know more about rollators than mobility scooters, and it shows. The first thing to adjust is to add pictures, but I wrote this all today and I'm done for the day lol.
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